It is my policy to keep this site as neutral as possible about the Marshall Protocol (MP). I do not understand how the question of whether or not sarcoidosis is an auto-immune disease and whether it should be treated with immune-suppressants or antibiotics became such a divisive issue in the sarcoidosis community. Whatever its origins, though, there truly is a rift between those who follow the MP and those who don’t. It saddens me that this debate hasn’t remained an intellectual one and has instead torn apart a community that needs to be united in its demands for more funding for research and education. Chronic Town is neutral territory. I have been honest and open about which side of the MP debate I’ve landed on. It’s pretty obvious that I have opted to follow the recommendations of physicians who think of sarcoidosis as an auto-immune disease and that my treatment is centered on immune suppression. But I’m not strident about this. I’ve heard from many MP adherents who have had excellent results.

In this latest entry, I write about my insurance company wanting to force me to see a doctor who recommends the Marshall Protocol. My outrage isn’t directed at the MP. I hope it is clear that I am angry that faceless, uninformed bureaucrats want to choose for me how to think of and treat my sarcoidosis.

Only a week or so after my most recent hospitalization, my health insurance plan decided to flex its muscles. Instead of just shelling out thousands of dollars for a treatment plan I’ve worked out with my doctors, my insurer wants in on the action. No more waiting in the wings. The bean counters want to play an active role in determining what treatment I should get for my chronic, systemic sarcoidosis.

The bean counters picked a doozy of a day to get involved. Maybe they planned to catch me at my weakest. I had made it out of bed and into my doctor’s office to talk with him about starting a new drug called Rituxin—which is showing early promise in treating neurological forms of sarcoidosis. But I was still shaky from the flare-up of neurosarcoidosis that had landed me in the hospital. The combination of vertigo, episodes of visions loss, and crushing head pain made it difficult for me to walk across a room. My left foot is still encased in a cumbersome orthopedic boot to treat the fractures caused by osteo-sarcoidosis. I used a single climbing pole to steady myself on what seemed like a very long march from the waiting room to the examination room.

By the time my doctor arrived, I was sweating profusely from pain, from the effort of lurching around with my pathetic pole, and especially from the nauseating sensation that the world is rocking that my vertigo causes. But I was proud of myself for making it there—and especially for having compiled a list of cogent questions about new medications and the pending results of neurological tests that would show whether I was having seizures or active inflammation on my optic nerve. I was especially curious about what my Helena doctor had learned from talking with my sarcoidosis specialist in Ohio.

As always, my Helena doctor patiently worked through my list. I always have a list of questions and concerns for our meetings—even when I’m in the hospital and he stops by early on his morning rounds. I mention this because I take pride in being an informed and educated member of the team of physicians, therapists, and other health care professionals who I’ve trusted to make me well. I research medications—old and new—that are used to treat sarcoidosis. I plod through scientific journal articles about new findings in treating sarcoidosis. Sometimes I need to send particularly abstruse pages from periodicals with scintillating titles like the Journal of Chronic Obstructive Pulmonary Disease or Current Opinions in Pulmonary Medicine to my sister, who has a Ph.D. in a scientific field, to make sense of the medical language, because for it, it’s like trying to make sense of a paper written partly in Swahili. But I keep at it. I make a note of the physicians who are spearheading new drug trials or who are rethinking established notions of the disease’s process and treatment. Jay and I even traveled to an annual meeting of WASOG (or the World Association of Sarcoidosis and Other Granulomatous Diseases for those of you who want to tie your tongue into knots) in Denver a few years ago. We listened to researchers present papers on sarcoidosis-related topics ranging from if right-heart catheterizations can predict whether milder forms of cardiac sarcoidosis are likely to progress to life-threatening ventricular abnormalities to whether or not treating early and less severe cases of sarcoidosis with prednisone actually contributes to causing the disease to become chronic, systemic, and severe. We have kept tabs on the doctors we met at that conference. In the ultra-specialized world of medicine, these researchers form a sort of elite cadre. We came to understand that a few specialists at far-flung institutions drive most of the research into sarcoidosis—Marc Judson at the Medical University of South Carolina; Robert Baughman at the University of Cincinnati; Alvin Tierstein at Mt. Sinai Hospital in New York; Om Sharma at University of Southern California; Daniel Culver at the Cleveland Clinic; and Milton Rossman at the University of Pennsylvania, to name a few—and that each of these doctors has carved out a sub-specialized niche. One doctor might be particularly interested in treating ocular sarcoidosis, while another explores neurosarcoidosis.

It sometimes feels that keeping myself apprised of what’s happening in the land of treating and researching sarcoidosis is like having a second job—and one I don’t particularly relish. But what choice do I have? As many of you reading this know, too many internists and family care physicians know little about sarcoidosis—and what they do know is too often outdated or even untrue. I know I’m not the only person with sarcoidosis who has been told that the disease “isn’t a big deal” and that “no one dies from sarcoidosis.” The physicians who blithely pass along this misinformation are probably thinking of the National Institutes of Health studies that show that seventy percent of sarcoidosis cases are confined only to the lungs and actually remit spontaneously. How wonderful that the majority of people diagnosed with sarcoidosis don’t need any treatment to be cured and don’t have to watch as the disease moves from vital organ to vital organ like a lion stalking its prey. But these physicians seem to forget that for the other thirty percent of sarcoidosis cases, the disease is chronic, involves multiple organs, and requires treatment.

Conversely, I’ve seen my share of internists (and even some specialists) who don’t minimize the potential impact of sarcoidosis but instead make some aspect of the disease much more dire than it is. These purveyors of doom and gloom have seriously spooked me in the past with their forecasts of my untimely and unpleasant death. I don’t excuse the ignorance that causes these physicians to discount my health problems or to needlessly terrify me. (If a medieval-history major like me can find accurate information about sarcoidosis, there’s certainly no excuse for a doctor to be ignorant.) But I do recognize that sarcoidosis isn’t a disease that internists encounter every day. There just isn’t a sizable patient population to drive demands for more research into its causes and cures, like there is with other diseases like diabetes, breast cancer, or depression.

I don’t want to invest a lot of time into learning about my disease and the latest treatment options. But what choice do I have? I want to get well, not to spend months spinning in vertigo or cringing in pain. And if I can’t be cured, I want to minimize the impact the disease has on my life. It would be nice if I could casually turn to the doctor down the street for cutting-edge treatments, but that is simply not a real possibility. If I want to beat this disease, I need to work with the best doctors to get the best treatment. This means that I spend time pulling my hair out to make sense of odd-sounding medical terminology in scientific papers; this means I travel to another state to see a specialist; this means I have to pester that specialist to communicate with the doctors here in town who actually administer my treatments. And now, it means I will have to fight with my insurance company to see the specialist of my choice and to get the treatment my doctors and I think will be most effective.

When my doctor and I had gone through my list, he shifted uncomfortably in his chair. He is a good man and a wonderful doctor. He has always scrupulously asserted that sarcoidosis is not his area of expertise, but that he is willing to administer the drugs the specialist recommends. But even so, it is this local doctor—not the highfaluting specialist—who has had to deal with my various crises. It is he who had to pick up the pieces last year when my gastrointestinal system bogged down under all the harsh drugs I was taking. It is he who has to figure out how to make me functional when I arrive in his office suddenly unable to see, shaking from neurological pain, and babbling incoherently. It is he who oversees my chemo infusions every other week and then patches me up a few days later when I can’t stop puking and can’t keep myself properly hydrated. It is he who accepts the risk that I might have an extreme allergic reaction to the new drug, Rituxin, as it dripped into me in his office. Not surprisingly, it is he who got drawn into my health insurance company’s plans to better “manage” my care.

“Rebecca,” he said, after a few shifts in his swivel chair, “We’ve got issues with your insurance company.” He went on to explain that the bean counters wanted me to see a psychiatrist. I was already feeling pretty beaten down by the long stay in the hospital and all the bizarre and frightening new neurological problems that had brought me there. But this bureaucratic pronouncement that I seek psychiatric care made everything worse. I felt weirdly violated, as if someone had slipped into the room without me knowing and had now taken charge of my time with my doctor. This masked third party wouldn’t speak directly to me, but had instead made my doctor—one of the people I trust the most to look out for my interests—issue commands. “Do they think I am some kind of hypochondriac? Is that why I have to see a psychiatrist?” I asked my doctor. With his usual aplomb he said, “I have utterly no idea what they think. But I’d bet it has something to do with your pain medicine.”

Ah, the pain medicine. Now it made sense. I have worked hard with both my specialist and my local doctor to construct a pain management regimen that cuts down on my head pain without turning me into a zombie. Part of this plan involves oxycontin, a long-lasting narcotic pain medication. I don’t like taking the stuff—and I especially don’t like the fact that I am now physically addicted to it—but it is the only thing that manages my pain somewhat effectively. My doctor and I have talked extensively about the implications of regularly oxycontin use. He knows that I hate feeling fuzzy-headed and doped up. He knows that twice I have nearly tapered off the stuff before having the sarcoidosis flare up again, which meant that I had to start back up on the oxy again so that I can be moderately functional. That’s the twist—I’m the anti-anti-drug ad: my life is better on this medicine. Even when I’m in the midst of a disease flare, I am able to write more, spend more time with my son, be more coherent with my husband, and keep up with friends better when I take the oxy. I now keep scrupulous logs of how much and how often I take it and what my pain level is before and after each dose. I also have no doubt that I will stop taking them when I am not in pain. Like the other drugs I have to take—Cytoxan; Thalidomide; daily antibiotics to prevent the pneumocystis pneumonia I’m more likely to catch because of all the immune-suppressants I take; prednisone, to name a few—the narcotic pain pills are a necessary evil. I look forward to the day when they are no longer necessary, when I don’t have chronic inflammation in my brain stem and cranial nerves. But right now I do.

Pain medicine is quite expensive. So, too, are the daily Thalidomide pills. And that is ultimately why my doctor had to tell me that my insurance company wanted me to go to a shrink. The State of Montana, which employs Jay and insures us, recently changed the prescription-drug part of our insurance plan. The old pharmacy plan was annoying. We had to fight for me to get drugs like Thalidomide—which the specialist believes work well to treat neurosarcoidosis, but which are not yet FDA-approved for sarcoidosis—but had usually gotten our way. But our new prescription drug plan is even more zealously trying to limit expenditures for patients like me, complicated cases that don’t fit into their neat formulas. (Turns out that dozens of cancer patients—folks like me who take narcotic pain medication—are in the same boat. In a perverse way, it’s reassuring to know that I’m not the only one up against the bean counters.) In its efforts to cut back on my costly (and in their worldview, unnecessary) pharmacy bills, the bean counters in the prescription-drug part of my health insurance plan got the attention of the bean counters in the medical part of my plan. Without telling me anything about it, the insurance company conducted a review of my treatment. After talking with my trusted doctor, I now think that the bean counters’ recommendation that I see a psychiatrist is to ascertain whether I am a pain medicine junkie. I don’t have anything against psychiatrists per say (in fact, I’ve consulted with a few in the past), but I am insulted at the insinuation that psychiatric issues are a component in my illness or in the medication I take to manage the illness.

The bean counters have a hired gun of a doctor at their disposal. The recommendations of his “review” are insulting, nonsensical, and potentially life-threatening. In addition to the request that I visit the psychiatrist of his choice, the hired gun also directed me to get a “second opinion” at Johns Hopkins University. “Why,” I can hear you thinking, “would she be opposed to getting a second opinion from one of the best medical schools in the country?” First, I am still very sick from the latest neurosarcoidosis flare-up. I continue to have at least two episodes of vision loss each day; I continue to struggle with intense vertigo and pain. It exhausts me to travel a few blocks by car and run errands. I can’t imagine flying across the country to see a new doctor—much less collecting my medical records, arranging for someone to care for Andrew, and figuring out all the logistics of such a trip. Also, I don’t need a second opinion. I’ve already gotten a second opinion—and a third and a fourth and a fifth. Before Ohio, I’d been to sarcoidosis experts at National Jewish Hospital in Denver, Mt. Sinai Hospital in New York, and the University of Pennsylvania in Philadelphia. Just last year, I spent an exhausting and costly 10 days at the Mayo Clinic, where I saw a gastroenterologist, a neurologist, an endocrinologist, a cardiologist, and an oncologist (because many of the drugs used for sarcoidosis are also cancer treatments). The Mayo doctors all agreed with the treatment plan I had developed with my current sarcoidosis specialist in Ohio.

It was pretty clear to me that the hired gun hadn’t bothered to read my chart, or he would have known that I have not suffered from a lack of medical attention. I have deliberately sought out the best and the brightest to fight the multi-tentacled monster that is sarcoidosis. Not one of these specialists has ever cast doubt on my diagnosis of sarcoidosis or the treatment course I have followed. I suppose that the one benefit of having such a rare form of a rare disease is that the field of knowledge about sarcoidosis is relatively finite. By this, I mean that it’s actually possible for a patient like me to have a good grasp on what’s going on in the medical world of sarcoidosis. Because of the work I’ve put into reading journal articles, attending WASOG, following clinical trials, and keeping apprised of the chatter on different sarcoidosis bulletin boards and Web sites, I’m confident that I’m getting cutting-edge treatment. I am also certain that despite the letters “m” and “d” that come after his name, the hired gun knows less about sarcoidosis than I do. It didn’t take me long to figure out why a parsimonious health insurance company would suddenly want me to jet across the country to a hospital not considered “in network.” It is because Johns Hopkins is home to one of the very few physicians that publicly espouse the Marshall Protocol.

(As I said in my preamble to this entry, the question of whether or not sarcoidosis is an auto-immune disease (as my sarcoidosis specialist believes) or whether it is caused by an infectious agent (as Trevor Marshall proposed), is so divisive that most sarcoidosis-related Web sites ban the topic. I don’t think I need to prohibit any mention of the Marshall Protocol. Just knowing that I’m getting chemo to treat the neurosarcoidosis would inform you that I have opted to follow the auto-immune view. But I hope it’s also pretty clear that I am not a zealot about this. The MP has worked very well for many people; I have considered switching to it on several occasions. For now, though, I am staying the course with immune suppression.)

I was outraged by the hired gun’s demands that I make a pilgrimage to Hopkins. The only reason I could see that he wanted me to get this “second opinion” was to cut costs. Following the Marshall Protocol means taking a long course of antibiotics and Benicar (a blood pressure medicine). Since both of these medications are inexpensive, converting me to the Marshall Protocol would save the insurance company a lot of money on all the pricey, brand-name drugs I now take. Remicade costs $8,000 per monthly infusion; Cytoxan (and all the IV anti-nausea medicines I get with it) run about $13,000 every-other week; I shudder to think how much Rituxin will cost (I haven’t gotten my first bill for the eight-hour long infusion). Thalidomide costs over $1,000 a month, as do the narcotic pain medicines. What a difference it would make if I opted for the Marshall Protocol, wouldn’t it?

The only problem with my conversion is that I don’t believe in it. I’ve spent a lot of time reading about T cells and B cells and the immune system’s inflammatory response gone awry. I’ve seen data from clinical trials that test the efficacy of immune-suppressants on sarcoidosis. The Marshall Protocol hasn’t been systematically tested in the same way. In my opinion, it remains a theory. But why does this matter? Why do I feel like I have to justify following the recommendations of doctors all around the country? Why must I recount my opinion about T cells? How is it that my insurance company has made my following standard medical opinion seem dicey? It is not that I am requesting my insurance company pay for me to get herbal extracts in Guatemala. I’m not tracking down obscure doctors outside the community of accepted medical opinion. I’m trying to follow the advice of the Mayo Clinic, for god’s sake—the paragon of American medical expertise. I find it laughable that the hired gun has turned the standard script of health insurance company vs. sick person on its head. He has it backwards. I’m the party that is supposed to agitate for an alternate treatment; they’re supposed to force me to stay in the mainstream. But when it comes to money, scripts can be rewritten and principles thrown aside.

I am tremendously lucky that Jay is by my side—in this and in all else in my life. It helps that he is an attorney, that he knows what sort of language to use to fight for my right to seek a cure where my doctors and I see fit. I can’t imagine having to deal with a neurosarcoidosis flare, ongoing chemo, and this cesspool of misinformation and cost-cutting gone awry. Jay has been my knight in this battle. I don’t know how this will end. But I do know it will continue to cause Jay and me stress, and that it will likely continue to eat up our time as we fight for what is fair.

I know that I’m fortunate that this is the first truly serious insurance battle I’ve entered after all this time in Chronic Town. Whether or not you follow the Marshall Protocol, the path of immune-suppression, or the chocolate ice cream plan, I have no doubt that many of you have much worse tales of insurance company woes. If you ever want to vent about these experiences and want to share with the rest of us in Chronic Town how you’ve been able to see the doctors you want and take the medicines you need, write us and help us learn.

There’s a piece of me that thinks I should try to ferret out some larger meaning from these events. I could de-personalize my melodrama and try to argue something about health care reform or the state of medical research. But I don’t want to. I am so upset precisely because this matter is so personal. Medical decisions should be made by a patient and her doctor. As in matters of love, I think that when medicine involves more than two people things quickly become rather icky. I shudder at the thought of the hired gun’s cold and prurient eyes on me when I talk with my doctor. I don’t want his clammy hands on the exam gown or in my chart. Being a patient requires surrendering too much personal dignity and privacy as it is.